Another week with two hospital visits. On Wednesday it was to the Christie hospital for palliative radiation therapy to my left elbow. The ambulance picked me up with just enough time to get to the appointment on time at 14:00. I needed to get out of the wheelchair and onto the flat table to be marked up for the actual RT, but this was managed with little difficulty and help from the RT staff. Rather than getting back into the wheelchair I was transferred to a trolley. That was fine but I was worried the the wheelchair would be "borrowed" but my fears were unfounded.
There was a wait of about an hour before the RT. As I went in for the RT at about 16:15 I was told that the ambulance for my return journey would be booked. Transferring from the table to the wheelchair proved to be more difficult. I could take my weight on my legs but not move my feet. Once I did get back in the chair I was wheeled back to the holding area at about 16:40. The RT department closes at 17:00 so I was soon moved to the transport lounge where I was given a sandwich, piece of cake and a cup of tea. By 17:50 and no sign of transport I was again moved, this time to Ward 12 (I think the transfer lounge must close down too).
I was beginning to get worried now. Would I have the strength to get myself into bed once I got home? My wife was getting concerned too. Should she go to bed (she goes to bed early) and risk not hearing the door bell one I did get home? I arranged with my youngest son that I'd give him a call once I was on my way and he'd help me to bed. He'd also get there before the ambulance so could see to the door allowing my wife to get to bed. I told my son that I'd give a cut-off of midnight and if there were no transport by then I'd stay the night at the hospital. At 23:50 I told the nursing staff that I'd better stay the night as even if transport arrived in the next few minutes I doubt if I'd be able to get to bed at home. I stood my son down and transport was postponed until the next morning. The nurses helped me to get fro the wheelchair onto the bed and to remove my trousers.
I had a surprisingly good nights sleep. The nurse said that transport was rebooked from 08:00. I got my trousers on and waited on the bed. I was pleased that breakfast came before the transport. No sign of the ambulance by mid-morning and I was moved back to the transport lounge where I was fed and watered at lunch time. My mobile phone signal strength was too weak for outgoing calls or texts but I could receive texts from my son (who was working from home). He tried to get the admin of the transfer lounge to order me a wheelchair taxi but despite saying one would be avaiable in five minutes nothing appeared.
Sometime between 16:00 and 16:30 my next door neighbour arrived - she had been at a meeting at the hospital and told my wife she'd find me. She knew one of the admin staff and persuaded her to order a taxi directly (rather than through hospital transport). We were told to meet the taxi at the main entrance. We got there just as the taxi did. Once in the cab, I called my son to make sure he was there to get be into the house and into bed.
A formal complaint to North West Ambulance is being prepared!
On Friday I had a regular meeting with the consultant urologist at Stepping Hill hospital. No transport glitches for this visit. The consultant's clinic was running an hour late. With my PSA rising again he reckons that chemotherapy is the way to go and will refer me to the oncologist. I should get an appointment in the next four weeks.
11 September, 2010
29 August, 2010
Busy week
Last week was a bit hecktic with two visits to hospital.
On Tuesday it was to the Urology department for an infusion of Zometa (zolodronic acid) a bisphosponate to strenthen my bones. I got myself up and dressed early as I was not sure when the ambulance would arrive to take me. It arrived at about 9:25 and delivered me to the Urology department just on my appointment time. I needed a blood test first and the results took a while to appear. The Clinical Nurse Specialst had a problem finding a suitable vein for the canular for the infusion. One of the doctors dealt with it instead. The actual infusion only took about 15 minutes. Due to the delay for the blood test, the ambulance to take me home arrived whilst I was being treated and had to go away again. They returned just as I was being offered a sandwich. The CNS gave me a list of things to be checked on a blood test in the week before the next infusion. The community nurse from the local Health Centre will take the blood.
On Wednesday morning a fellow from Social Services arrived to investigate the options for ramps at one of the entrances. Our preferred option of temporary ramps are not possible because with both the patio and front doors the end of the ramp would end up on grass and there is not enough room at the back door. Each inch of height needs a foot of length. The step up to the back door is 11 inches, so an 11 foot ramp would be needed and the car port is only about 8 foot wide. The other options are a permenant ramp made with concrete or a semi permenant ramp made of metal. In each case there would be a "landing" level with the doorstep to allow the wheelchair to be turned through 90 degrees allowing plenty of room for the ramps. We have decided to take no action at present.
On Thursday afternoon it was Out patients regarding my left elbow. The ambulance arrived early, before 2pm for a 4:15pm appointment. This did not pose a problem because patients arriving by ambulance get treated first. X-rays taken whilst I was in hospital show that there is a tumour on the elbow. The tumour has started to affect the strength of my left hand, particularly the small fingrer and thenext one. The doctors thought they had contacted the oncologist at the Christie about it but as there was no record of them having done so will do so as a matter of urgency. I have another Out patients appointment in six weeks time as a back stop should I hear nothing from the Christie. I will cancel that appointment once I hear from the Christie. There was a bit of a wait for the ambulance home but I was back at about 4:30pm.
On Tuesday it was to the Urology department for an infusion of Zometa (zolodronic acid) a bisphosponate to strenthen my bones. I got myself up and dressed early as I was not sure when the ambulance would arrive to take me. It arrived at about 9:25 and delivered me to the Urology department just on my appointment time. I needed a blood test first and the results took a while to appear. The Clinical Nurse Specialst had a problem finding a suitable vein for the canular for the infusion. One of the doctors dealt with it instead. The actual infusion only took about 15 minutes. Due to the delay for the blood test, the ambulance to take me home arrived whilst I was being treated and had to go away again. They returned just as I was being offered a sandwich. The CNS gave me a list of things to be checked on a blood test in the week before the next infusion. The community nurse from the local Health Centre will take the blood.
On Wednesday morning a fellow from Social Services arrived to investigate the options for ramps at one of the entrances. Our preferred option of temporary ramps are not possible because with both the patio and front doors the end of the ramp would end up on grass and there is not enough room at the back door. Each inch of height needs a foot of length. The step up to the back door is 11 inches, so an 11 foot ramp would be needed and the car port is only about 8 foot wide. The other options are a permenant ramp made with concrete or a semi permenant ramp made of metal. In each case there would be a "landing" level with the doorstep to allow the wheelchair to be turned through 90 degrees allowing plenty of room for the ramps. We have decided to take no action at present.
On Thursday afternoon it was Out patients regarding my left elbow. The ambulance arrived early, before 2pm for a 4:15pm appointment. This did not pose a problem because patients arriving by ambulance get treated first. X-rays taken whilst I was in hospital show that there is a tumour on the elbow. The tumour has started to affect the strength of my left hand, particularly the small fingrer and thenext one. The doctors thought they had contacted the oncologist at the Christie about it but as there was no record of them having done so will do so as a matter of urgency. I have another Out patients appointment in six weeks time as a back stop should I hear nothing from the Christie. I will cancel that appointment once I hear from the Christie. There was a bit of a wait for the ambulance home but I was back at about 4:30pm.
21 August, 2010
Dependancy
Being dependant on others is, I suppose, the main change to my life. I spend most of the day in my wheel chair which allows me a degree of mobility and hence some freedom. Once I transfer to the bed in the evening my options are much more limited. Being dependant upon her has increased the burden upon my wife. It is not easy to judge how big the burden is and I do not want to be, or even appear to be, demanding at all. After all, if things get too much for her it will do neither of us any good. I try to go with the flow and accept what is offered on the basis that she is doing the best that she can with my interests in mind. That is not to say that we necessarily agree about what is in my best interest.
We both also depend upon friends and neighbours for help with shopping and small errands. It is good to know that we have such caring people around us. I also have a carer come for a time in the morning to help me get washed and dressed and to tidy the bed once I've transferred to the wheel chair.
Having access to the internet allows me to to get a fair amount of our grocery shopping on-line as well as some non-grocery stuff. At the moment I am using a laptop lent to me by a friend but I have bought a new one for myself which should be delivered on Monday. The internet is a bit of a lifeline in other ways too. I can keep in touch with family and friends and use on-line forums to extend my (virtual) social life.
I've not been home very long yet so we are still learning and adapting to the new circumstances. No doubt things will get easier over time and the stress on my wife will lessen. I do hope so.
We both also depend upon friends and neighbours for help with shopping and small errands. It is good to know that we have such caring people around us. I also have a carer come for a time in the morning to help me get washed and dressed and to tidy the bed once I've transferred to the wheel chair.
Having access to the internet allows me to to get a fair amount of our grocery shopping on-line as well as some non-grocery stuff. At the moment I am using a laptop lent to me by a friend but I have bought a new one for myself which should be delivered on Monday. The internet is a bit of a lifeline in other ways too. I can keep in touch with family and friends and use on-line forums to extend my (virtual) social life.
I've not been home very long yet so we are still learning and adapting to the new circumstances. No doubt things will get easier over time and the stress on my wife will lessen. I do hope so.
16 August, 2010
New routines
I've been home nearly a week now and new routines are beginning to get sorted out. A carer comes in the morning to make sure I'm up and dressed and to tidy the bed and empty the commode. We've decided that we can manage without the carer in the evening. Making sure I take my medicines at the proper time needs a bit of concentration. Most of them are taken at the same time each morning with a smaller number in the evening but there are a couple that are taken during the day too.
Next week I have two appointments at the hospital. I will be relying on ambulance transport which looks like I'll be spending a lot of time waiting around. Once we have some ramps fitted, I'll have the option of using a wheelchair taxi instead which will be a lot more flexible.
Next week I have two appointments at the hospital. I will be relying on ambulance transport which looks like I'll be spending a lot of time waiting around. Once we have some ramps fitted, I'll have the option of using a wheelchair taxi instead which will be a lot more flexible.
12 August, 2010
Home at last
I came home from the hospital yesterday evening. I'm very impressed with the adjustable bed with an air filled matress. Matt, eldest son, had set it up and put on the sheet and duvet. A carer attends morning and evening. I wasn't sure this would be needed but it is a comfort.
The cat has decided to pretty much ignore me. I'm not sure where he spends the day. It used to be in the corner of the front room, my living quarters now, but not anymore.
The cat has decided to pretty much ignore me. I'm not sure where he spends the day. It used to be in the corner of the front room, my living quarters now, but not anymore.
17 July, 2010
SCC again!
After a couple of falls during the week and my legs collapsing under me on Wednesday last it was obvious my legs were getting rapidly weaker. So I contacted the Macmillan nurse to say I was worried that the weakness might be caused by spinal chord compression (SCC). She contacted the palliative care consultant and a GP at the health centre. Between them they decided I should go to A&E to get it checked out. The GP organised an ambulance to take me.
After a thorough examination the A&E doctor agreed that SCC looked very likely and managed to arrange an MRI scan that afternoon for confirmation. The scan showed that there were areas above and below where the last SCC was that looked suspicious. The doctor than arranged for palliative radio therapy to the spine to be given the next day at the Christie hospital and I was admitted to Stepping Hill.
I'd had attended the oncologist's clinic on the 6th July and had mentioned the leg weakness to the doctor that saw me (not the actual consultant). She gave me a brief examination but did not hint at the possibility of SCC being a possible cause. I find that disappointing because if SCC had been checked out then there would have been a better prognosis as the SCC would not have been so severe.
I was transferred to the Christie after breakfast. As there were two places on the spine to treat it was not initially clear whether both places could be done on the same day or whether I'd need to stay at the Christie overnight and have the second place done the next day. In the event both sites were treated that afternoon and (after a long wait) I was transferred back to Stepping Hill.
After a good night's sleep Thursday night, I awoke on the Friday morning to find that I had recovered some strength and movement in my legs. So the RT and steroid medicine had had an effect. Good oh! Later that morning I had a chat with a physiotherapist and occupational therapist. I was able to demonstrate that I could transfer from the bed to the bedside chair with the use of a walker for support. So my legs can support me again with help from my arms, although going any distance with the walker is probably not on yet. The OT measured me up for a wheelchair. She will also make a home visit to see what else might be needed before it would be safe for me to go home.
It looks like I will be in Stepping Hill for a few more days. The ward doctor has arranged for the spinal specialist to see me, probably after the weekend. Hopefully the specialist will be able to tell me how much more, if any, improvement I'm likely to see. I shall then be able to plan accordingly. As things are at the moment my wife will have more to do to look after me and my mobility will be more restricted.
After a thorough examination the A&E doctor agreed that SCC looked very likely and managed to arrange an MRI scan that afternoon for confirmation. The scan showed that there were areas above and below where the last SCC was that looked suspicious. The doctor than arranged for palliative radio therapy to the spine to be given the next day at the Christie hospital and I was admitted to Stepping Hill.
I'd had attended the oncologist's clinic on the 6th July and had mentioned the leg weakness to the doctor that saw me (not the actual consultant). She gave me a brief examination but did not hint at the possibility of SCC being a possible cause. I find that disappointing because if SCC had been checked out then there would have been a better prognosis as the SCC would not have been so severe.
I was transferred to the Christie after breakfast. As there were two places on the spine to treat it was not initially clear whether both places could be done on the same day or whether I'd need to stay at the Christie overnight and have the second place done the next day. In the event both sites were treated that afternoon and (after a long wait) I was transferred back to Stepping Hill.
After a good night's sleep Thursday night, I awoke on the Friday morning to find that I had recovered some strength and movement in my legs. So the RT and steroid medicine had had an effect. Good oh! Later that morning I had a chat with a physiotherapist and occupational therapist. I was able to demonstrate that I could transfer from the bed to the bedside chair with the use of a walker for support. So my legs can support me again with help from my arms, although going any distance with the walker is probably not on yet. The OT measured me up for a wheelchair. She will also make a home visit to see what else might be needed before it would be safe for me to go home.
It looks like I will be in Stepping Hill for a few more days. The ward doctor has arranged for the spinal specialist to see me, probably after the weekend. Hopefully the specialist will be able to tell me how much more, if any, improvement I'm likely to see. I shall then be able to plan accordingly. As things are at the moment my wife will have more to do to look after me and my mobility will be more restricted.
11 July, 2010
Ooops
I missed out an important piece of information - PSA count is down from 236 to 156. So the revised hormone therapy seems to be working.
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